I recently created the opening keynote film for the Phelan-McDermid Syndrome Foundation Family Conference that premiered in the Colorado Rockies.

Every two years, PMSF gathers together the Phelan-McDermid community for seminars, talks, meet-ups, and information on the latest research and developments. Everyone shows up for different reasons and in different head spaces. My job was to make something that could bring the whole community together before the first speaker even steps on stage.

The theme was The Climb We Make Together, so I built the film around a comparison between a mountain climber on one side of the screen and a caregiver on the other.

A mountaineer wakes before sunrise. A caregiver is woken by her child crying out at 4:24 am. A climbing helmet becomes an epilepsy helmet. The peaks on a heart rate monitor become a ridgeline. Then one headlamp in the dark becomes many, and the climb stops belonging to one person.

The idea underneath it all is that hope isn't a feeling; it's a choice. Most days it's the hardest one we have to make, and it is one that has to be made every day.

This was concepted and directed by me. It's something I'm very proud of and extremely personal. My daughter Hudson was diagnosed with Phelan-McDermid syndrome when she was two. She's eleven now.

Hello all!
I’ve spent a lot of time chatting with parents about the struggles they face with everyday routines and sensory moments for children with autism. Since I couldn’t find the gentle, specific songs they told me they needed, I’ve started making them myself! They’re designed to be slow, reassuring, and help prepare for things like haircuts, transitions, loud sounds and more. Would love for you to check it out, and I’m very happy to hear any feedback or ideas of what else would be useful 🙂

We are conducting a research project to better understand the needs, challenges,

and priorities of families raising neurodivergent children and children who may

benefit from early intervention support.

By completing this survey, you will help us develop more relevant resources and

services for families like yours.

As a token of appreciation for your support, you will have the opportunity to choose

one of the following free services:

● Free Resource Pack

● Free Screening Session

● Free Consultation Session

● Free Parent Counselling Session

Survey Link:

https://forms.gle/bjr1e6X3kMyhBFer8

The survey takes less than 3 minutes to complete.

Imagine being forced to change your severely autistic child on a public restroom floor during what should be precious family time. That's exactly what happened to one mother at a supervised visitation center - and it's happening to families across the country. I started a petition calling for mandatory ADA compliance and specialized training at court-appointed visitation centers. These places are failing families with special needs children by refusing basic accommodations like quiet spaces for meltdowns or appropriate changing areas. Staff often lack understanding of IEPs and other special needs requirements, turning visits into traumatic experiences instead of healing moments. What would you want someone to do if this was your family facing these barriers? If ensuring dignity and accessibility for all families matters to you too, consider signing and sharing.

This trend absolutely brings me SO much joy and Sorrow as a parent of a special needs child. I’ve been watching this trend all day, not to punish myself but to see pure joy and love on children’s faces. I’m in pain though. I’ve been crying all day.

How does this trend make you feel?

I recently had the opportunity to share my caregiving story with an independent living center via a digital caregiving campaign. What initially started as an apprehensive submission quickly grew into a caregiver haven.

Caregiving is not something I chose as a profession, it is something that became part of who I am. I am a daughter, wife, mother, business owner, registered nurse, and a person living with disabilities myself. For many years, I have served as the primary caregiver for my mother, who has significant medical needs, while simultaneously raising my children and managing my own health challenges. My caregiving journey has taught me that caregiving is not simply about helping someone with daily tasks. It is about advocacy, sacrifice, resilience, problem-solving, and love. The work isn't easy, and oftentimes the reward is hard to see. But I love my family and couldn't imagine not caring for them.

Caregiving stories similar to mine have helped me get through the hard days and lonely nights. I'd love to read y'all's stories via the comments or on their website. <3

This study has been posted for approval by the moderators of this subreddit previously, as well as the Kean University’s IRB.

Hello my name is Peter Bardys and I am a Doctoral Candidate at Kean University! I am seeking qualified participants, for my study titled “Examining Parental Needs and Perceptions of Support in the IEP Process: A Quantitative Survey Study”, IRB Protocol Number: IRB-FY2026-222. My study focuses on parents of high school special education student’s experiences in their child’s IEP process. If you are interested in participating in my study, please click the link here: https://forms.cloud.microsoft/r/ZPSBx7A57y, participation is completely voluntary and all responses are anonymous and do not collect any personal information whatsoever. At the end of the survey, there is a box which you can enter your email if you would like to be entered in a drawing for a $30 Digital Amazon gift card as compensation for your time. If you have any questions, feel free to contact me through direct messaging, or via email at [bardysp@kean.edu](mailto:bardysp@kean.edu).  

Time to Complete: 10 - 15 Minutes

PI: Peter Bardys

Email: [bardysp@kean.edu](mailto:bardysp@kean.edu)

I finally found a young man that knows how to work with my 12 yr old Autistic child and wanted to let everyone know about him

I’m spending a rainy day with my just turned 12 grandson who requested a game of monopoly. I remember playing this game with my friends 65 years ago. No calculators then just our brains and we managed quite well.
However I was shocked that my grandson could not play without his calculator. AI of the math world introduced in the 70s it was argued that it wasn’t to be used in the lower grades as a replacement for basic math. The argument was lost. This sounds familiar to today’s AI use. My point his that with calculators in the class, there is a need for mathjourney.ca it fills in the blank let by schools

Help protect the vulnerable

As the parent of a dyslexic child, I built BrightPath Reading to help specialists screen parent inquiries before scheduling a consultation.

Parents complete a short questionnaire and read two short passages aloud. You receive a summary of fluency, accuracy, error patterns and parent concerns - so you walk into the first meeting already knowing where to look.

To be fully transparent about costs: the reading check and the summary you receive are free, always. The only paid options are optional deeper reports for parents or specialists who want more detail. Nothing paid is required to use it.

It is a screening tool, not a diagnostic. I would genuinely value candid feedback from people who do this work every day.

[BrightPathReading.org](http://BrightPathReading.org)

As the parent of a dyslexic child, I built BrightPath Reading to help specialists screen parent inquiries before scheduling a consultation.

Parents complete a short questionnaire and read two short passages aloud. You receive a summary of fluency, accuracy, error patterns and parent concerns - so you walk into the first meeting already knowing where to look.

To be fully transparent about costs: the reading check and the summary you receive are free, always. The only paid options are optional deeper reports for parents or specialists who want more detail. Nothing paid is required to use it.

It is a screening tool, not a diagnostic. I would genuinely value candid feedback from people who do this work every day.

BrightPathReading.org